Sunday, August 31, 2014

Sue was transferred by ambulance on Friday evening from Barnes Jewish Hospital to Barnes Jewish Extended Care. Physicians at the hospital finally determined that she is suffering from an unusual autoimmune disorder that has affected her intestines. This is the fourth or fifth stay for Sue at BJEC, so many of the staff know her. The care is quite good, and the physical therapy is excellent. Saturday morning a physical therapist was assessing and working with her already.

When Sue arrived at BJEC on Friday, it was already past the dinner hour, so the nurse ordered her a tray. The woman from the kitchen who delivered it said she had made Sue a grilled cheese sandwich because she remember how much she likes one. I sought the woman out again yesterday to thank her, something that got lost with all the hubbub of check-in and paperwork. Her name is Barbara. She told me how she had always liked Ms. Boaz, ever since she (Sue) came to visit her husband when he was a resident there. That was in 2006. There are newer and fancier places--two of which Sue has been in--but none with caring staff like Barbara and none with more effective physical therapy treatments.

After six weeks of illness, three hospitals, many tests, two central line ports, and tons of medications, Sue has a whole lot of recovering and work to do to get back to her pre-July condition. She is motivated, and her spirits are good. Yesterday, for the first time in several weeks, she was able to talk with Pete in their routine telephone conversation.

Sunday, August 24, 2014

There is not a lot more to say about Sue's current problems. She is still in Barnes-Jewish Hospital, still undergoing tests, still with no definitive diagnosis for her intestinal problems. She has a central line port through which she gets various meds and, starting last night, nutrition amounting to 1600 calories per day. She is very weak, having spent five weeks now in misery, over four of those weeks in a hospital bed. Her spirits are good. She is sleeping a lot and complaining not at all. The BJH staff could not be more helpful or kind.

Thursday, August 21, 2014

Wednesday, August 20, 2014

Finally at 1:00 am Monday night Sue was transferred by ambulance from St. Mary's Health Center to Barnes-Jewish Hospital downtown (Big Barnes). I do not know what the long delay was all about, but thankfully she is now in the hospital where her physicians work and where she has been countless times before. It took almost an act of Congress (well, not this Congress) to get her moved, but it happened. She is in the Shukar Unit which is kind of an overflow, catch-all kind of place. She was there one other time, and the care was excellent, as it is proving to be this time.

Today she had upper and lower GI tests, an EEG, a scan of the shunt in her head, and those are only tests we know about. In spite of so many days in hospital, so many tests, two central line ports for IV's, and so much disorientation, Sue is in good spirits, undaunted by this new challenge.

St. Mary's Health Center is an excellent place. Sue's house physician there, Dr. Rajagopal, agreed that Sue needed to be in Barnes for continuity of care and for the specialized expertise of the staff. In all Sue's many hospitalizations, I have never witnessed such devotion and kindness as everyone at St. Mary's exhibited. The mission statement of the place is "Through our exceptional health care services, we reveal the healing presence of God." Every person in the place seemed to have signed onto the mission. Really, it was quite extraordinary. Only at the Apple Store have I ever seen employees so singly focussed on a common goal--just not so dire.

St. Mary's is part of the Franciscan Sisters networks of hospitals, one of which is St. Joseph's in St. Charles where mother spent far too much time decades ago. St. Joseph's is also the hospital where my husband died in 1985.

In other news, Sue's loving caregiver, Linda, took the "ice bucket challenge," the fund raising project that is taking the country by storm. Linda posted a video on Facebook of her grandchildren dumping pails of ice water over her head. Linda's beloved brother-in-law is suffering from ALS, a truly horrible disease for which there is, as yet, no treatment. Early on in Sue's illness, at least two physicians thought she had ALS, which put her through some years of hell. ALS is the only diagnosis for which there is no six-month waiting period for Social Security disability--that because Senator Jacob Javits of New York died of the disease.

Sunday, August 17, 2014

Hello all. We are sad to hear about Sue still being so sick. Such a terrible time for her right now. I wanted to post some pictures from our trip to the lake house last weekend. We had a great time as always but missed her presence terribly.

As Jana said earlier, we had very good luck fishing this year. The sunfish were plentiful. What we didn't expect was for the neighbor boys to catch a HUGE snapping turtle in their net off of the swim dock. Take a look at this monster!!! We had some friends join us this year and we were catching smaller fish to use as bait, much to Ellie's chagrin. She didn't really know what to think of that but she enjoyed checking the lines in the morning.

The girls spent lots of time in the lake and Kaitlyn was brave enough this year to jump off the dock into our hands. Baby steps. They of course loved the pool again this year as it was a comfortable 81 degrees. Every morning they did their chores, watering the plants, cleaning off the spiderwebs, and taking out the trash. We tried to take the wave runner out but before leaving the no wake zone we realized it wasn't running correctly. We eventually packed it back up after 2 days of calling the boat shop for ideas and changing out the spark plugs among other things. It was running much better than it did originally but there is still something wrong.

The girls kept asking when Goldman and Mad Dog were going to stop by and make us some bacon for breakfast. Ellie made sure to tell our friends that they did not make bacon as well as Goldman.

We are really hoping that next year Aunt Sue will be well and will be able to join us. We really missed her. Here are some more pictures from our time there. Hope everyone has a great week.

Friday, August 15, 2014

Saturday, at the RR Museum, two fairly dressed men came by my station (Teletype Machine, 1940 vintage)

In short discussion, one said he had used these machines in the past so I offered my seat for him to do some typing. While he was typing "now is the time for all good men to come to the aid of his party", the other fellow & I started talking.
Sequence I don't remember exactly. Somewhere in the conversation I asked if they were with the big 100 year celebration of Assemblies of God. (both of them had an accent) He said no, they were from St. Louis (I mentioned the e-mail from you about Sue being in Barnes Jewish Hospital.
(This was before I got the info Sue was at St. Mary's) He said "No, he was a surgeon at Mercy Hospital in STL) Further mentioning Sue's condition, he asked my thoughts in prayers. I said something like "I have never known it to hurt" He said he would like to write down a prayer for Sue so I said how about your buddy typing it on the teletype machine.

Sue is still in the hospital, still very ill, still at St. Mary's. Today she should be moved to Barnes Jewish Hospital downtown where her physicians are and where she has been many times before. She is back to her usual personality, except very depressed and weak--for good reason. The people at St. Mary's are extremely kind, and the care is great. However, Scott, Chris, and I believe she needs to be in Barnes where, hopefully, specialists can help her. One person should not have to suffer so much!

Her nurse yesterday saw photos of Jalen and Braden that I had brought to cheer Sue and made over their good looks. It was fun for Sue and me telling her about the boys and hearing about her two girls.

Wednesday, August 13, 2014

This morning I felt well enough to go see Sue at St. Mary's Hospital about 12 minutes from our house. She is still in ICU but only because there is not a regular room available. She was alert, glad to see me, still somewhat confused but considerably improved from reports earlier this week. She has an IV in her neck, and she is on a light diet as the physicians try to control the intestinal infection she is suffering.

Chris retrieved her glasses from the rehab facility and delivered them to her this evening. He reported that she is much, much improved. He has seen her everyday since she went into the hospital last Thursday. Still no word when she will be released.

Saturday, August 09, 2014

Poor Sis, these days it is a journey from one crisis to another. I have delayed posting this new bad news but now feel I must. On Thursday morning a nurse at BJEC called me to tell me Sue had had a period of 5-10 minutes when she was unresponsive. The staff had helped her back to bed, and the house physician checked her over. Later in the afternoon, again the nurse called to say Sue had had a severe seizure and the physician was sending her to the hospital (Barnes-Jewish downtown) by ambulance.

Wednesday evening I had come down with some awful respiratory thing and was very sick. I called Chris and he immediately went to the hospital to meet the ambulance. Then began a comedy of errors. For whatever reason the EMT people rerouted Sue to St. Mary's Hospital, probably because it was closer by about 5-10 minutes. The ER doctor at St. Mary's called me because he urgently needed background information about her. He said she had already suffered three seizures while in the ER. I answered his questions, then called Chris who went immediately to St. Mary's. By the time he arrived, Sue was in an intensive care unit.

Chris has been going to see his mother every day, swinging by here to bring Shirley and me chicken-noodle soup. Today he reports that Sue is being moved to a regular room, was sitting in a chair when he came in, and is much improved though not yet in her normal mind.

John and Jana and their girls are at the lake, as you read in the last entry. Scott and Beth are in Mexico on their delayed honeymoon, due back tomorrow. Shirley and I are both down with this awful "bug," on antibiotics, feverish, coughing, and generally miserable.

On a much happier note, Margaret Ann is doing remarkably well. Stephanie posted a photo of her on Facebook in which she looks a whole like Mother. I "lifted" the photo and will post it later.

We are sad to have missed Aunt Sue here at the lake and the girls are taking very good care of the plants, spider webs and trash duties! Kaitlyn says "I miss you Aunt Sue and hope you feel better soon. I love you!!" Ellie says "I want to see Aunt Sue at the dinner table next time we come!"

The lake has been perfect - lots of floating and jumping off the swim dock. The neighbors have some renters this week so they have been fun to watch. They are building across the way so we got to listen to jack hammering all day yesterday! Ellie and Kaitlyn said they are running out of fish to catch already. They were catching so much that John barely had time to take them off the hook.

We will post pictures later once we get them downloaded. The girls are ready to jump in the lake!

Monday, August 04, 2014

Sue's daughter-in-law Shelly ferried Sue from Lake Regional Hospital in Lake Ozark to the Barnes Jewish Extended Care (BJEC) facility near here this afternoon. The 180-mile trip was uneventful except for the policeman who pulled Shelly over but gave her only a short sermon after hearing the purpose of the trip and seeing Sue's hospital identification bands still on her wrists.

I met Sue and Shelly at the facility to help get Sue settled in. The staff, especially the charge nurse, Linda, were extremely helpful and kind. Several remembered Sue and were happy/sorry to see her return. The very first person she encountered in the main hall was her old buddy, Jack, the friend she made when she first was in the facility in late 2010. His greeting, "Is that my old friend, Martha?"

After two weeks being very ill and eleven days in bed, Sue is very weak. She will begin rigorous physical therapy tomorrow. We hope this will be a short stay.

Rose is typing this for me. I am sitting here in Lake Regional Hospital at Lake Ozark. The plan is that I will be released on Monday. Shelly, Chris' wife, will call for me, and I'll transfer to Barnes Jewish Extended Care in St. Louis for intensive physical therapy rehab. I am going to be even more delighted than usual to see Shelly on Monday. I am much improved but have lost strength from lying in bed almost two weeks.

These past two weeks have been pretty horrible, but tolerable only because of Beth and her friend, and Linda. My former neighbor Leslie in Springfield surprised and delighted me with a visit yesterday. Rose will post photos later. I've watched a lot of Cardinals baseball although the games haven't cheered me much.

This hospital is very fine. The staff who tend--nurses, physicians, physical therapists, the cleaning people--are universally kind. It is right off Highway 54, but Rose managed to get very lost coming the lake house to here this morning.

Scott and Beth left early this morning for their delayed honeymoon in Mexico, a gift from Beth's former employer. When Beth, Jalen, and Brayden came through St. Louis on July 19, Beth lost her engagement ring. It was a fine ring I had gifted to her and Scott last year. She was heartbroken about it. On Friday a Charter Communications technician working at Rose and Shirley's came into the house with the ring and diamond in his palm. He had found them on the street in front of the house. The diamond and ring were separated, obviously run over by one or more cars. But the ring can readily be repaired. Needless to say, Beth was ecstatic. When Rose called her, she teared up.

All reports are that Margaret is home and doing very well, back to playing yahtzee with the family.

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